This is a blog about epilepsy. I have lived with seizures for 25 years now and I want to share my experiences to allow others with epilepsy a chance to compare their experiences to mine and to allow those without epilepsy to understand further the condition and how it effects one. I had the VNS device implanted 4 years ago and have posted on that extensively. Please feel free to comment and I will try to respond.
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9 comments:
Hi Scott,
I'm so glad to find your blog. Thanks for sharing your insights. After living with my daughter's epilepsy for over three years now, it only just now occurred to me to search for epilepsy blogs.
I found your comment here especially intriguing since my daughter's partial-complex seizures are almost all triggered by heat. This is especially true when she is in enclosed places, such as a hot shower, car, or even wrapped up in a blanket.
When she has the seizures, my wife and I immediately implement what we refer to as “cooling measures“ in order to bring her core temperature down. We lightly bath her back and limbs with a cold cloth, remove excess clothing, and place small bits of ice in her mouth (nothing she could choke on). In other words, almost exactly what you described in your post. These measures have served to arrest the seizure and bring her back around within no less than 2 minutes 100% of the times that we’ve applied them.
My wife and I discovered these techniques by observation and trial and error. No one has ever mentioned these to us. This is the first time I’ve ever read that someone else practiced these.
When we've mentioned this to doctors, they almost always look at us like we're at best, poor dumb parents, and at worst, out of our minds. Have you run across many other people who have had heat-triggered seizures? Once again, thanks for your blog.
Charles,
Thanks for posting. It is good to hear that you have found some measures to help your daughter when she is having a seizure! I have not spoken with anyone that reported symptoms such as you report, but that is hardly surprising considering the breadth of causes and symptoms that people experience with epilepsy. To be honest, I have never met anyone that had the exact same conditions as any other person.
As for the cooling helping, My wife has found that cooling me down (cold cloth on head, cool drink as soon as I am able, and removing heavy clothing) does help me recover faster after my seizure has ended. As for your daughter's doctors, well, I would consider finding a Neurologist that asks good questions and actively listens to the answers that you provide. Recently my wife and I thought that heat might be bringing on seizures for me, as I always seemed to get hot before having some seizure activity. What we discovered was that the seizures were triggering an increase in heart rate, which made me feel hot. The seizures themselves, as shown in the EEG, were being triggered during the sleep stages. Hence, lack of sleep was causing the seizure activity which made me feel hot. My doctor activity listened to the symptoms I described, performed tests to confirm her suspicions, and then spent some time explaining to me that I probably needed to get an extra hour of sleep to help keep the seizures under control.
Thanks for Visiting!
Hi Scott,
I so appreciate the feedback and input. You made some very relevant observations and I value your opinion. Me wife and I are making an effort to do a better job of connecting with the epilepsy community (For lack of a better way to put it. There is so much more to my daughter than this blasted ailment. I hate to define her or anyone else by that one thing). I will certainly be checking back in the furture. Oh, and thanks also for the e-mail and kind words.
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My son has partial epilepsy for the past 18 years. Dr's have tried various means but he has seizures almost every month. The first epileptic occurred when he was five years old. i took him to a specialist who subscribed anti-epileptic medication. From then on he had to take four capsules per day, but most of the time he had seizures until I got to know about Dr.ewoig product to cure epilepsy. we order for the product, now i can tell you my son is now living a better life thanks to dr ewoig His herbal remedy is the only permanent solution to Seizure. You can always contact him through his email for more information(drewoig18@gmail.com)
Am One of the happiest woman on earth since my son was cured from the problem of seizure,which he has been having for eight years now,he do have the attack two to three times a week,which is affecting is education and his life.i got the contact of a doctor from the post of one Mr paul thanking him for curing his seizure problem,i got the contact and contacted him then he made me to know that the medication is a permanent cure, and that was how i got the medication which i used on my son,and for six month now there have been no sign of seizure in him again.any one with such problem can contact him on his email drwilliams098675@gmail.com
Am One of the happiest woman on earth since my son was cured from the problem of seizure,which he has been having for eight years now,he do have the attack two to three times a week,which is affecting is education and his life.i got the contact of a doctor from the post of one Mr paul thanking him for curing his seizure problem,i got the contact and contacted him then he made me to know that the medication is a permanent cure, and that was how i got the medication which i used on my son,and for six month now there have been no sign of seizure in him again.any one with such problem can contact him on his email drwilliams098675@gmail.com
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